Hole in the Heart

[DebbiB28]

Hello, I've just been diagnosed with a hole in the heart and am awaiting decision on what type of surgery. Any other experiences out there?

[Midgeymoo17]

Me kind of.

I had a VSD (hole between my ventricles). However it was part of a much more serious defect so the only option was open heart and that was when I was very young. Had open heart valve more recently.

[DebbiB28 in reply to Midgeymoo17]

Thank you - open heart appears to be one option but I'm in my early 50's. Was also wondering about recovery time scales etc.

[Midgeymoo17 in reply to DebbiB28]

My experience of recovery timescale for Open Heart:

8-weeks was ready to return to living alone, went back to University and normal days. Still some discomfort and quite tired but wearing off.

3-months- all discomfort had ceased. All normal physical activity (swimming and long distance running) was slowly integrating. Tiredness continued allieviating.

Tiredness for me only started to settle 6 months Post-Op. But I think this is because through a number of administrative cock ups by my university my disability support was not in place . So I was under execessive stress trying to keep up and not managing to. So I think this was psychological rather than physical.

[Jac1909]

Hi Debbi I had an Asd closure by keyhole last Wednesday at Barts. Arrived 7.30 am Wednesday and went home Thursday afternoon. Can't drive or lift for a fortnight but feeling well. I'm on blood thinners for a few months.

The worse part for me was the waiting. I was referred by my local hospital in June 2017 and my case meeting wasn't held until late September. I didn't get a date for the op until about a fortnight before it happened. Along the way I rang the hospital monthly and was told various timescales but If someone had said to me at the beginning it will be at least nine months before we operate my life wouldn't have felt so on hold and I would have realised there were a lot more serious cases than mine.

So saying, I have nothing but praise for the care and dedication of the staff at Barts. They put me at my ease, listened to my concerns and helped me and my family through a bit of a scary time. I came home feeling well.

My main advice would be to ask for a realistic timescale and ring the cardiac nurses for advice.

Wishing you all the best

Jac

[Midgeymoo17 in reply to Jac1909]

I was treated elsewhere but I was also a 6-9 month timescale. 12 months if you count time from investigations.

[DebbiB28]

Thank you so much Jac. I too have been waiting so long for appointment after appointment but hoping I'm at the end of testing now! It really is scary and also for those around you, and your life does seem on hold. The information you've given certainly helps - it seems I have open heart or keyhole as options, depending on MRI result this week.

[Jac1909 in reply to DebbiB28]

Wishing you well Debbi

Jacx

[clarehealsworldwide]

Best of luck Debbi

[DebbiB28 in reply to clarehealsworldwide]

Thank you. The support here has really helped.

[clarehealsworldwide in reply to DebbiB28]

Glad we can help in any way. Would you like me to send you some distant healing with reiki & a crystal grid? Clare

[DebbiB28]

Just an update - well I survived the MRI. Not the most wonderful experience but the staff were fantastic and I took diazepam! It lasted about 1 hour and a quarter as apparently quite detailed. They let my daughter sit at one end to chat to me and I had a button to press if I needed out! If I can do it - anyone can! Good luck to anyone facing this test and thanks to everyone who offered help/advice.